Carly’s Voice (19 page)

When Barb asked her the following week how she enjoyed the program, Carly was hesitant
to write. Barb went on to ask her who was in her group.

“Boys,”
Carly answered.

Thinking she had opened the door, Barb went on asking questions but got no response.
Finally, Barb hit on the idea of asking if she had flirted with the boys.

“Yes,”
Carly coolly answered.

Barb shot a look at Howard. “Do you think she knows what flirting is?” I’m not even
sure Taryn understood the concept of flirting at the time. “What do you mean by ‘flirting’?”
Barb pressed her.

“I gave them hugs and fliped my hair,”
Carly answered to the stunned silence of her teachers.

“Did you have a boyfriend there?”

“Come on. I am too good looking,”
Carly concluded with an air of cockiness. She then signed “finished” by waving her
hands, palm to chest, signaling she was done speaking for the day.

Tammy called Dina to tell her what Carly had written and see how she had been acting
around the other kids.

“Oh my God,” Dina replied, laughing. “I was wondering what she was doing. She kept
hitting her hair.”

By all accounts, our daughter should be devoid of self-confidence. She cannot speak,
independently engage in activities, or even wash and care for herself. If we were
to believe her words, however, she did not see herself as out of the game.

I give Tammy credit for nurturing Carly’s self-esteem. “Why is it that they make these
kids
look
so disabled?” she once asked me, referring to how teachers tied bandanas around the
necks of kids who drooled or dressed them for the convenience of the caregivers in
bibs and easy-fastening clothing. Tammy had always focused on making Carly look and
feel as appropriate as her twin, by styling her hair and dressing her in the same
types of jeans and shirts that her sister had. Carly was beautiful. At eleven, her
awkward gangly body was filling out; her complexion was smooth and bright. In the
years that would follow, we would learn that Carly saw herself as a typical kid locked
in a body over which she had little control. I would like
to think that by treating her similarly to her twin, we helped instill this sense
of self.

As Carly’s voice became stronger and steadier, we began to see a playfulness, coyness,
and an ability to manipulate. Before she wrote, one schoolteacher noted that Carly
was the only person she knew who didn’t speak but could lie, referring to how Carly
used her communication bracelet to request a bathroom break to avoid unpleasant tasks.
But with words, Carly was proving that she could go head-to-head with the adults that
controlled her world.

We had been trying to bribe Carly to type in longer sentences. When she typed two
words, we gave her two chips.

“We want you to type lots of words. If you type an eight-word sentence, you’ll get
eight chips,” Howard encouraged her.

“You don’t need numbers. Just give me the bag,”
she demanded.

At that point, laughing, they gave her the bag. She had earned it for her wit as much
as for her proficiency. Carly concluded the session by saying she wanted a hug from
Howard, something she had never expressed before.

Not every session with Barb and Howard was as productive. Some days she refused to
type and they would work on other communication methods like sorting words written
on flash cards to help Carly learn vocabulary. We imagined that writing for Carly
was like exercising a muscle. It was difficult and awkward. She typed painstakingly
slowly with her right index finger. Attempts by her occupational therapist to engage
other fingers in the effort failed. We felt that in time, however, she might become
more fluent. This has not been the case, and it would be many months before she could
reveal how hard it was for her to sit and focus on the task of spelling.

Despite these dry periods of writing, Barb and the team—at our urging—refused to use
other forms of encouraging Carly to type, such as facilitated communication. FC had
been around since the
seventies as a technique of helping children with a variety of challenges that limited
their oral or physical abilities to communicate. The facilitator helped by supporting
the arm or wrist of the person as they expressed themselves using a keyboard or computer.
However, there had been a number of studies discrediting the veracity of the writing
by those using FC. We didn’t want to get involved with anything that could be misconstrued
as therapists influencing Carly’s words or intent. We wanted to understand our daughter
truthfully.

We had so many questions for her; we ached to have full conversations as spontaneously
as we did with our other children. Though we tried, Carly would not sit and have a
conversation with her family members. We only had witnessed her typing firsthand in
the previous months because Carly finally allowed Howard to videotape some of their
sessions so he could show us what she was capable of.

Still not understanding the controlling power of Carly’s obsessive-compulsive disorder,
we tried endlessly to convince Carly to write with us. Drawing on her years of experience
working with other children with speech-language challenges, Barb told us that keeping
kids engaged is the first step to teaching them to communicate. She continuously looked
for ways to let Carly guide the conversations. “If she’s motivated, she’ll type,”
Barb said. One afternoon Barb pulled out one of her large photo albums filled with
family pictures. “Let’s look through it,” she told Carly, “and you can ask me anything
you want about the people you see.”

Barb slowly turned the pages of plastic-covered images of family events and vacations,
images that are generally more interesting to those familiar with the subjects in
the picture. Carly, however, was intrigued and was able to settle, looking in the
general direction of the album. She tapped at an old black-and-white picture at a
family gathering.

“Is that woman your mother?”
she typed.

Startled, Barb asked how she knew that.

“She looks like you,”
Carly replied.

“Who’s that?”
Carly asked pointing to a picture of a teenage boy shooting baskets in front of the
house.

“My son, Brandon.”

“He’s hot.”

Before Barb could ask whether Carly was referring to his appearance or his body temperature,
Carly went on to ask,
“Does he have a girlfriend?”

Howard, who is always quick to smile at Carly’s antics, burst out laughing. “Oh Carly,
where is this coming from?”

But this interest gave Barb an idea. Why not ask if Carly would like to have a weekly
chat with Brandon, who lived away at college? Using the webcam and instant messaging,
Brandon would be able to talk to Carly, and she could respond in writing. Clearly
she was motivated by boys, and what better way to start getting her to communicate
with the outside world.

The next week, Barb arranged for their first online conversation.

With Brandon sitting at his desk in his dorm room, Carly started the conversation
by asking,
“Why do you have a grocery cart in your room?”

Brandon turned to look behind him and laughed. “Oh, my roommates and I use it to haul
groceries and stuff.”

“Do you have a girlfriend?”
Carly continued.

“Um, yeah,” he replied.

“That’s not good,”
she chided.
“Is she as cute as me?”

They all laughed. “No,” Brandon flattered her. “You’re way cuter.”

Carly seemed satisfied and signaled that she had had enough typing for the day.

“Did you like that, Carly?” Barb asked. “We can do it again.”

“Esss,” she replied, this time out of her mouth.

And by a stroke of luck, we discovered that the topic of boys could help us bridge
the divide.

Q:
What’s the one word you’d use to describe autism?

A:
That’s a hard question. I don’t think you can just pick one. I think I would say
things don’t always look like they appear. Just because in your eyes I might not look
smart does not mean that’s the case.

—From a conversation with a producer of ABC News

Like a wobbly foal exploring its freedom, Carly’s voice started small and gained strength.
As she opened up, she became more of a daughter and less of a charge. As long as Howard
was present, Carly would hold court at the kitchen table with Tammy, Matthew, or Taryn
looking over her shoulder and have short conversations after dinner. Howard would
lean back like a grade-school student defying the teacher’s plea, his lanky frame
cantilevered in his chair propped up on its back legs. From this precarious position,
he would guard the bowl of chips used as reinforcement for Carly completing a phrase
or sentence. He had a patient way of looking Carly in the eye and speaking firmly
but calmly, as if drilling words into her to initiate a conversation. Most of the
time her siblings cheered her on with words of encouragement. As we learned that Carly
had a sassy sense of humor and a greater vocabulary than we had imagined, Taryn couldn’t
resist testing her to see how far she would go.

“Do you know what
constipated
means?” Taryn asked her nonchalantly one evening after hearing us discuss Carly’s
lack of bowel movement that day. Taryn was not asking out of sisterly love; she had
a mischievous twinkle in her eye.

“When you can’t shit,”
Carly replied unfazed.

I don’t know what makes me laugh more. Her flip answers or the lack of expression
on her face when she’s cracking jokes. Matthew walked into the room and asked Carly
how she was.

“Dad?”
she asked, ignoring Matthew’s question.

“Yes, Carly?”

“Did you drop Matthew on his head as a baby?”

“No. No, Carly, we didn’t.”

She was becoming quite the troublemaker. But I wished her increasingly clever expressions
matched an evolution in her behavior. Rather than becoming more calm and in control,
as Carly ended her preteen years, her levels of agitation and explosive outbursts
were becoming more frequent and ferocious. She had started violently slapping herself
on the thighs, arms, and neck. If the fit escalated, Carly would throw herself to
the floor and bang her head or slap her hands or feet onto the hard surface. Her pediatrician
and clinicians could bring little understanding, and Carly was mute on the subject
when asked. Perhaps it’s puberty, reasoned one of her doctors.

The therapists’ response was to intervene and get her to focus on something else,
which they call
redirecting
. Containing Carly was like subduing a bucking bronco. Carly’s lean, sturdy frame
was strong from years of rocking and struggling with her support
workers. Taryn and Matthew would scold her, telling her to stop while Howard or I
would attempt to hold her and restrain her from hurting herself.

“I can’t stand watching Carly do that to herself,” Tammy cried despondently. “It makes
me sick to my stomach every time she does that. What good is it if she’s smart inside
if she’s such a mess on the outside?”

I suppose we realized how Carly must have been suffering. I know we were. There were
days when the house felt like a pressure cooker. Carly’s outbursts, after a long day
of work, left me raw and short-tempered. Taryn and Matthew would withdraw to their
rooms to hide from the chaos. But Tammy and I had nowhere to run. We wanted to believe
it was some sort of behavior that Carly could control. Her doctors seemed unable to
find any physiological reasons for her discomfort. They tested her ears, eyes, and
stomach and shrugged their shoulders. While Carly seemed to have a growing vocabulary
and understanding of her situation, on the topic of her outbursts she was unable to
offer any clues to the cause or even articulate how she was feeling.

I came to dread the nights. Howard and Mari would be gone for the day. Carly would
drift off to sleep fine, but by three in the morning be up jumping around her room
bleating and braying like a cornered horse.

After months of unreturned phone calls and unsatisfying answers from our doctors,
Tammy was determined to get action. We called the Cleveland Clinic because of its
holistic approach. They agreed to look at all of Carly’s charts and let us know if
they felt they could help. “I don’t care how much this costs,” Tammy said. “She can’t
go on like this.”

As we assembled the charts and files to send them, Carly’s condition was deteriorating.
It was so bad that Barb had discontinued her sessions. “There’s no point in me trying
to make her work while
she’s so behavioral,” she said sympathetically. Tammy and Howard had on more than
one occasion brought Carly to the emergency room hoping that if a doctor saw her in
the midst of a meltdown, they would be sympathetic and admit her for more advanced
tests. After waiting three hours one afternoon, they were sent home with no solutions,
feeling more hopeless. Eventually, Tammy called our pediatrician and left a message
that we wanted Carly admitted to the Hospital for Sick Children, Canada’s preeminent
pediatric hospital. And still we waited. Canada’s healthcare system is socialized.
This means that all citizens receive excellent care paid for by the government, but
wait times and a sense of urgency are generally the cost of this privilege.